23 replies to this topic

[markandelly]

Haven't been on in long time . Can't remember how to work on this board. Looking for long time cml people with long term undetectable . Anxiety is unbelievably harsh side effect. Needing input help from anyone who has gone off the drugs, how long? I'm the caregiver, thank you

[Trey]

What are the side effects, and what dosage currently? 

 

If I were to switch at 10 years, I would probably prefer Tasigna at reduced dosage rather than Sprycel after 10 years on Gleevec.  Maybe just my preference.

 

You can search "cessation" and find discussions about it.  Some here have been doing that successfully for a couple years now.

[markandelly]

Trey the last time we got on here you were taking 200 mg of gleevec I think?  Mark went to 200 for about a year , then the pcr showed I think .02 or something where it had always been .000 so the doc said he needed to go back on 400 gleevec which  he did for a couple weeks I think, Im losing track. at the last appt she said "Mark you haven't felt well in 10 yrs I recommend you to stop the gleevec for a couple weeks then try sprycel  and maybe you'll feel better" at least that's what I heard.

after 2 wks he went back to 200 mg gleevec , its been for less than a week, but hes already experiencing anxiety which has always been the worse side effect so he wants to just quit everything. what is your status if you don't mind my asking? it was your post a couple yrs ago(?) that encouraged him to drop his dose.

thanks for the word cessation to search on.

Ellen,wife

[kat73]

For what it's worth, my experience with Gleevec was that I never felt well (2 years).  Anxiety and depression were additional major side effects for me.  When I switched to Sprycel, the anxiety and depression began to lift.  I also felt well, although I still had the various strange effects here and there, off and on - but I felt "not sick", except for fatigue.  My point is only that switching MIGHT make your husband feel a lot better.  If it doesn't. then you'll know.  Give any switch some time, of course, right?

[markandelly]

For what it's worth, my experience with Gleevec was that I never felt well (2 years).  Anxiety and depression were additional major side effects for me.  When I switched to Sprycel, the anxiety and depression began to lift.  I also felt well, although I still had the various strange effects here and there, off and on - but I felt "not sick", except for fatigue.  My point is only that switching MIGHT make your husband feel a lot better.  If it doesn't. then you'll know.  Give any switch some time, of course, right?

What helpful input and thank you. How many mg. are you on? I'm assuming u take daily. His onc has recommended to him quite a few times. It's the "known" vs the unknown. The possible fluid build up around lungs is def. a turn off. We perceive that the lowest effective dose makes that very unlikely as in 25 mg.
as for tasigna that stuff scares the cr@p out of us. I mean it comes with a bright red warning label re possibility of sudden heart failure.
You wont find any suggestions for alternative therapy for CML .western medicine is used worldwide . As a person living w autoimmune disorder I identify with being Dx w a medical condition abt which so little is known!

[Trey]

I'm still on 200mg for last 6 years.  10 years since diagnosis (this month).  PCRU in less than 1 year and never lost it.

 

When did Mark go to 200mg and lose PCRU?  Did he regain it?  Is his PCR currently PCRU? 

[markandelly]

I'm still on 200mg for last 6 years.  10 years since diagnosis (this month).  PCRU in less than 1 year and never lost it.
 
When did Mark go to 200mg and lose PCRU?  Did he regain it?  Is his PCR currently PCRU?

Sorry if I misled you. To my limited understanding .003 is still undetectable remission according to the reports it's always said that since 6 months after dx. 10 yr ago Similar to your scenario I think. Even his onc said she might of jumped the gun n might should have given it more time to pan out but she's very conservative but I feel she's got more confidence in changing up in the last yr or so. She's definitely supportive n I want to think she's more confident of being able to get him back in remission should he ever encounter that which he has not
Is Pcru .00000?
He started on 400 G & was undetectable within 6 months. stayed on 400 abt 8+ yr then 300 then 200 for a year. I think he went back to 400 for a very short time then back on 200 but I think he's trying cessation for a few weeks n considering a low dose of spry cel based on all this research we r doing again + his onc said all new patients start on sprycel now not gleevec n it might be easier on him. Only one way to find out.
Ty so much I can't wait to tell him you stayed w 200 all these yrs. have you considered a break? I think anxiety is his worse side effect it seems to be really bad sometimes. Fatigue yes but going p/t over a yr ago has been a major plus for that.

[kat73]

Markandelly, I'm not sure if you asked me what my dosage was/is on Sprycel, but in case you did, I was started on 100 mg once a day.  As I said, I pretty immediately felt way better than I had in the two years on Gleevec (at 400 mg).  After 3 months we dropped me to 70 mg a day because of myelosuppression (PCR number was going down nicely).  My blood count numbers began a very slow but definite trend upward toward normal and I remain on 70 mg today, having gradually inched my way to PCRU for the first time last visit.  As a sidebar, while I was on Gleevec, periodically I got so miserable that my ex-onc would let me drop to 300 mg and 200 mg.  Although my PCR never went UP, it seemed to plateau during those times.  But I definitely felt noticeably better.  Over a long time of sticking with it, it became pretty clear that Gleevec didn't seem to be the drug for me.  My new onc was fine with trying Sprycel which, for me, was better. 

 

I understand your fears about pleural effusion, particularly since no matter how many years go by uneventfully, it remains a risk.  But I can tell you a little story:  I was in the hospital for an infected dog bite and before surgery they did a chest x-ray for pre-op workup.  It never was mentioned to me again and I didn't see the results - assumed it was normal.  Fast forward to an insurance dispute that required us to gather all my hospitalization records.  A 3-inch thick package of paper arrived at my door!  After we won the dispute, I had a whole lotta scratch paper.  But first, I decided to go through it.  Lo and behold, there was the chest x-ray report with a noted "moderate pleural effusion" in one area.  Didn't know I had it, and no doctor ever worried over it.  Naturally, I asked for a follow-up x-ray later and it was normal; the effusion must have cleared up on its own.  When I asked my onc about it, he shrugged and said they're finding a lot more of these appearing than they'd thought, but that most of them didn't need any intervention or stopping of Sprycel.  This is just one personal anecdote; many others have had quite scary effusion battles - but the point is, my anxiety lessened considerably.  I figured, if it's a pleural effusion worth worrying about, I'll probably have symptoms that will alert me to action.  Otherwise, I'm going to wipe that worry off my daily list. 

[Trey]

Your lab apparently says the cut-off for reporting is .003 which is about a 4.5 log reduction.  So that is PCRU for your lab. 

 

Most labs cut off reporting numbers and call the PCR "negative" at 4.5 log, as your lab does.  Some labs go out farther to 0.000 which is 5 log reduction.  Some only go to 0.00 which is 4 log reduction.  So PCRU is defined differently by various labs.

 

If he actually switches to Sprycel it should be very low dosage.  Ask the Onc how low a dosage she would allow.  If the Onc does not go down to 20 - 30mg Sprycel I would personally not switch. 

[AllTheseYears]

Markandelly:  I was diagnosed 14 years ago; Gleevec 400 mg for nearly all that time.  Yes, anxiety and depression are part of the Gleevec regimen, but those conditions also mark the CML journey, in my opinion.  I have been undetectable for nearly 11 years, but continued to take 400 mg Gleevec until recently because, as my doctor said, "Why mess with a good thing?"  For me, the Gleevec side effects were better than CML, which is a lousy disease. I know that because I was very sick by the time I was diagnosed.  Gleevec, with all the side effects I experienced, especially in the beginning, seemed wonderful to me. Then again, other TKIs weren't available then.

 

Now that we have new data on cessation trials from overseas, my oncologist and I have agreed to my own, personal cessation trial.  Fear and uncertainty kept me (and my onc)  from cessation earlier because the data indicated the odds of stopping TKIs weren't good.  We know now, after the trails continued, that the odds are quite good for certain people, especially those with prolonged, deep remission. I stopped my Gleevec, which I myself had reduced to 200 mg for six months, on Labor Day 2015. 

 

I am experiencing withdrawal -   even more fatigue and joint pain, but I am optimistic.  Other side effects have lessened. (Yes, I had side effects for the entire 13.5 years; just plowed ahead.) Unless my stats take a nosedive, I'm going to stay TKI free as long as possible. 

 

Best wishes with a highly personal decision.  In my view, there's no "free lunch" with any TKI - or maybe even without a TKI. CML causes anxiety. Just make the most informed decision you can and then deal with it. The survivor likely can have a CML-free/almost free break.  Therapy and other drugs can help deal with anxiety, if needed.  As for exhaustion, I had (have) to go easy on myself and rest more than other people my age. Even went to part-time work and fewer commitments. I accepted these changes as my "new normal."  I've said this before about CML and the effects of TKIs:  "A normal lifespan isn't the same as a normal life."  That mantra helps. 

[Antilogical]

"A normal lifespan isn't the same as a normal life." --AllTheseYears

 

A very good point, ATY.  Thank you.

[p.a.m.]

Hi Everyone.  I also haven't been on in a long time.  I was dx'd in 2007 and on gleevec 400mg daily.  Never have reached undetectable.  I have fought anxiety and some nasty side effects with gleevec until Dec2014 when doctors suggested to try another drug.  Had horrible anxiety about switching.  Started sprycel 100mg and ended up in hospital with severe infection and repeated antibiotics  for the first 4 months.  Doctors agreed to lower dose to 50mg and told me as long as I remained under 1.0 with PCR bcr-abl testing that disease won't progress. I would like to get all three stages.   Do I go up on dose and grin and bear the side effects or maybe switch?  Any advice would be appreciated .   

[scuba]

Hi Everyone.  I also haven't been on in a long time.  I was dx'd in 2007 and on gleevec 400mg daily.  Never have reached undetectable.  I have fought anxiety and some nasty side effects with gleevec until Dec2014 when doctors suggested to try another drug.  Had horrible anxiety about switching.  Started sprycel 100mg and ended up in hospital with severe infection and repeated antibiotics  for the first 4 months.  Doctors agreed to lower dose to 50mg and told me as long as I remained under 1.0 with PCR bcr-abl testing that disease won't progress. I would like to get all three stages.   Do I go up on dose and grin and bear the side effects or maybe switch?  Any advice would be appreciated .   

 

p.a.m. - when did you start your 50mg Sprycel? And what was your latest PCR test result as well as your CBC blood markers (such as neutrophils, rbc, platelets)?

[p.a.m.]

Hi Scuba,

I started 50mg in Feb or March 2015, I was on 100mg in Dec and Jan and part of March.  Latest PCR Sept 15 was .074 up from .052 in Jun.  Neutrophils 3.0 Lymph 1.3 Monocytes .4 eosinophils .1 basophils .0.  RBC 4.37 platelets 228.  All cbc is good except Protein a tiny bit low and TSH is H= 9.01 t4,free= 1.8 

 

wishing I could get all 3 levels.  

[scuba]

Hi Scuba,

I started 50mg in Feb or March 2015, I was on 100mg in Dec and Jan and part of March.  Latest PCR Sept 15 was .074 up from .052 in Jun.  Neutrophils 3.0 Lymph 1.3 Monocytes .4 eosinophils .1 basophils .0.  RBC 4.37 platelets 228.  All cbc is good except Protein a tiny bit low and TSH is H= 9.01 t4,free= 1.8 

 

wishing I could get all 3 levels.  

 

You are doing very well on 50mg. and should stay there for now. Your PCR's 0.07 and 0.05 are statistically insignificant. Your CBC's are terrific. 

 

You are below MMR (major molecular remission) on 1/2 the normal dose for Sprycel.  As long as you have no side effects you can feel, you can stay at this level. 

 

You are in a good place. Congratulations.

[Gail's]

Need thyroid med or increased dose if you're already on it. By my lab standards that tsh is super high meaning your thyroid is working very hard. Talk to your doc.

[rcase13]

Yep both TSH and T4 are high. I've been fighting the crazy thyroid numbers ever since I stated taking Tasigna last year. See an Endocrinologist and they can monitor and prescribe the right medicine. I have to have mine checked every month because who knows what it will do next. Mine is high one month low the next.

[tammielee]

Hi, I've been on gleevec for 3 yrs. Had major side effects. Dr. has changed me to sprycle it's now been 2 months. I'm starting to get anxious feelings but not as bad as they were from gleevec. yes sudden death is a fear. I haven't even told my family about yet. I don't know if I will either. I do know what to look for as in difficult breathing or heart beating oddly. go to the E.R. Just as if you would any way but at lest you know what mite be the reason for it. I hope this helps you and good luck.. tammie 

[kat73]

Tammie - Sounds like you're having a LOTTA fear.  Does it help at all to think the other way around? As in:  "I had a lot of trouble with Gleevec, but thank goodness there is another med I can take that is every bit as effective and has already begun to help me with the very first pill. Maybe I'm going to get relief from side effects with this new one.  Maybe I'm going to zoom downwards on my PCR number.  I may even - right now - be heading toward undetectable in the foreseeable future on this new med."  Instead of worrying about POSSIBLE troubles, could you take stock of how you actually feel right now, and in the weeks ahead?  Worry wears a rut in your brain - each worry sort of digging it deeper.  Whereas, considering good possibilities or checking in with reality and noticing good feelings - that's like filling up the hole again, allowing your brain to move on.  I have found that when I'm hyper alert for some symptom and I begin to fixate on fear of it, it almost magically starts to appear!  Now that I'm on to my own tricks, I can reverse it.  Anyway, try to think of Sprycel as a good drug - it's making you well. 

[hannibellemo]

Tammielee, sudden death is not something I think about with Sprycel AT ALL. Try and put that out of your mind! The probability of that happening to you is so incredibly low... don't waste anymore of your precious resources thinking about it.